Archive for the ‘The Headache’ Category
(Oh right, I have a blog. It’s not that I actually forgot about it (I know, you thought I was serious), it’s that these past two weeks have been insanely busy. Anytime the baby was napping, 90% of which is done on me, I was either cleaning or studying for my board exam. And typing one-handed, as I am now, is harder than it seems.)
I know early in pregnancy I mentioned that my headaches were better, which came as a great surprise to all of us. As the weeks ticked away, my head continued to be largely awesome. There were headaches here and there, but I didn’t miss a single day of either of my clinicals due to pain. And that was pretty impressive.
My theory was that the increase in blood volume and the increase in abdominal pressure increased the pressure in my head. Since we knew that one of my major issues was low intracranial pressure, it only followed that increasing the pressure was the answer. And the only way to know if this theory was even feasible was to see if the headaches came back after the baby arrived.
And boy have they.
I had hoped that pregnancy had permanently flipped a switch somewhere, but it hasn’t. The headaches are back and they are seriously, wildly unpleasant, especially because laying down in a dark room is not an option most days. So far, unlike the occasional headaches I had while pregnant, these don’t respond to Tylenol or anything else I’ve thrown at them. A few seemed to have been legitimate migraines, but my migraine medication is not safe while breastfeeding, so there’s no reason to really bother labeling them.
I told my husband late in pregnancy that if my headaches came back that I was going to become a Duggar because I both love kids and hate headaches. Obviously there’s no way to know if my headaches will retreat again with another pregnancy (though lending support to my argument is that my sister, who is pregnant, is also having way fewer headaches…) and we’re not really ready for another baby (though we both totally want a million more now), but the idea has been discussed. And we want more kids soon, but 2 in a year is pushing it. Or at least it is until the headaches get worse (I kid…kind of).
I don’t know what, if any, treatments can be used now considering the breast milk situation, but it is exhausting managing that kind of pain and a baby, even if he is about the most easy going baby ever. I’m feeling a little defeated because managing everything requires reserves that I’m pretty low on, but I don’t seem to have many other options. The baby needs to be cared for, the studying has to happen and there’s just not a whole lot of room for wallowing.
I’m not sure how to conclude this. I am hanging in here, I am functioning okay, but I’m disappointed. I had forgotten somewhat about this part of my life. I had forgotten what it was to be a patient and was so enjoying just being a person. It was something I was happy to forget, and a role I’m hesitant to resume. But I will do what is necessary because it’s no longer just about me, it’s about my family and for them I will find a way, but it seems that this journey is far from over.
Now that the baby and I have made our way into the third trimester, things are starting to slow down a little. I feel exhausted to my core like I did in the first trimester, my back and hips are a little more painful than in previous weeks, and yes, the headaches. They are very much here.
They are just, seriously, not my favorite. And they aren’t really responding to tylenol anymore. They aren’t really responding to rest. They aren’t really responding to my plights to the universe to please make it stop already. I am still able to work through them (so far) and they’re still not as bad as they were pre-pregnancy, but they are a far cry from the glory of the first trimester when they were so so gentle.
They are just not gentle anymore. Sometimes they don’t start until the afternoon, other times they’re there first thing in the morning. They are present more days than they are not, which is frustrating. I doubt they’re related to pregnancy, I think I was just pampered so much earlier on that I’ve lost my ability to manage them like I used to. I’m not even sure they’re really as bad as I think them to be, my scale has just gotten so beautifully skewed towards the light side.
The other frustrating part of these headaches is that they seem to be coming with more nausea than they ever have before. It’s not gotten severe and these do not appear to be migraines (thankfully), but it’s hard enough to work through a headache, adding in constant low lying nausea is just another circle of unpleasantry that I don’t have the energy to manage. And because of course it is, the nausea medication’s major side effect is headaches.
I’m hoping that perhaps the cure for the headaches is more rest and less stress, so I’ve been trying to slow down on the weekends and starting tonight I’m making a concerted effort to get to bed earlier. I’ve been staying up until nearly 10 and getting up at 6, which is no small amount of sleep, but I can do better and even if it doesn’t help the headaches, it certainly can’t hurt the bone crushing fatigue.
Otherwise I can think of no variables to manage. I’m getting enough water, I’m eating relatively well balanced meals and even though I’m not sleeping enough, I’m sleeping pretty well most nights again (knock on wood), so I’m not really sure what else there is to do. And as much as I’m afraid they’re going to get worse throughout these remaining 12.5 weeks, I’m even more worried that I’m not realizing how much better they are now and that post-pregnancy is going to be an even rougher transition than it would be with just (ha, just) a baby.
But since I cannot control that now, I’m just going to go, get ready for bed and hope that tomorrow is a better day. Or that I can at least continue to manage in spite of the pain.
So the first trimester of pregnancy was a time of nausea, fatigue and very few headaches. I’m not going to pretend like the first two were pleasant because that is a bold-faced lie, but the third was pretty kickass. I had about 8 solid weeks of almost no real headaches worth noting. It was beautiful.
The second trimester has been nausea free for the most part, I can now eat both beef AND chicken (mostly), and I have a pretty significant headache every damn day. The first two parts are pretty great, but the third is the opposite of kickass. It is literally kicking my ass.
Sigh. The headache honeymoon is over.
I don’t know exactly what has changed, except hormones and maybe stress, but I do know that these headaches are a real freaking drag. They are pretty much my normal headaches, but occasionally with a migrainous twist thrown in. And the worst part is that I know somedays that my migraine medication would make it go away, only I can’t take it because I love this baby too much for my own good. Literally.
I think what is making it the most difficult to manage is that I had all that time off and so my endurance, my tolerance is down. It’s like if I had a drink right now, I’d be hammered because I’ve been sober for so long. These headaches are knocking me over because I’m not used to them anymore. I was living in baseline pain land, and it is extremely pretty.
I had nearly forgotten how awful it was to be in this much pain all the time. There are some days where Tylenol helps a little (takes the pain from about an 8 to a 7.75), but the moment it wears off, the headache amps right back up. And I’m only taking the Tylenol when I’m really desperate because I don’t need rebound headaches on top of everything else.
It’s frustrating because even now when I’m not drop dead tired all the time and I can actually stay awake and do things, I don’t want to. I just want to lay down and make my head stop hurting, or lay down and wish my head would stop hurting, because that’s usually what happens.
I haven’t found anything that seems to trigger the headaches now and most of the time I haven’t found anything that relieves them either, including sleep, which really sucks.
I’m slowly starting to get worn out by the combination of my work and school hours and these headaches. Work isn’t distracting me from the pain as much as it once did, and the pain is absolutely interfering with my daily activities. I hate admitting that, but it totally is and there’s pretty much nothing I can do about it. My OB didn’t like the vitamin combination that my neurologist recommended, so I’m fresh out of options besides the periodic Tylenol.
I know I can manage this in its current state, but I am worried that it’s going to get worse and there’s going to be a limit to my tolerance soon.
I’d really just like some pain relief. Even if it’s only temporary, hell, even if it’s only for tonight.
I saw my neurologist 2 weeks ago and told her how much better my headaches have been. We were both so happy with the realization that something about pregnancy totally agreed with my brain, even if we weren’t sure exactly what it was. She gave me some vitamin recommendations and we agreed that I’d call or email if I needed her, but otherwise, I’d be in touch after the baby was born.
All good right?
Yea, well, I am on day 3 of a really relentless headache. All is not good.
It’s not really my classic headache, it’s just like one degree under migraine. It’s contained on one side of my head, it doesn’t like it when I’m active (classic migraine sign), it doesn’t like it when things get loud (classic migraine), but it isn’t quite the ferocity of my normal migraines. And it just won’t freaking go away.
And the only thing I can take is Tylenol. Tylen-freaking-ol.
Admittedly and fortunately, the Tylenol helps a little. It takes the pain from like 8 out of 10 to 7.8 out of 10. I feel like a space cadet all the time, I cannot focus on anything. I came home from class early today because I simply could not manage the rest of the day. And I knew the drive in traffic would not help anything.
I am truly not sure how I’m going to manage clinic tomorrow. I have a very light morning schedule, which is good, but even still, being upright, being awake, is tough now and worries me pretty considerably. My afternoon is a hot mess of back to back to back patients every 15 minutes for 3 hours.
I have done everything I can think of. I have rested, I have drowned myself in Tylenol, I’ve done water and caffeine and it’s just not working. Nothing is working. Each night I go to sleep desperately hoping that I’ll wake up without the headache in the morning and so far, that has not been the case.
I need a break. I can’t take migraine meds, I can’t drown myself in caffeine and NSAIDs which are usually more effective than Tylenol. I can’t really do anything, so I really just need it to stop.
I know it seems silly to be this knocked down by headaches since I have had way worse than this, but this one is different, and I can’t treat it. It’s like a nasty cut that isn’t the end of the world, but that you aren’t allowed to clean out or put a bandaid on. It’s just going to stay irritated and take longer to heal. This headache simply isn’t healing.
I’m not sure what else there is to do except what I’m doing. Continue to hydrate, try to relax, use the Tylenol only as needed (the last thing in the world I need is rebound headaches) to function and wait it out. It has to go away eventually, right?
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You may or may not have noticed that there has been very little discussion of headaches lately. And though I didn’t want to point it out before, it was because my head has really been doing pretty good in the past couple of weeks. And you since I’m writing you can probably surmise that something has changed.
The past two days have been not so great.
The thing about the headaches is, when I have a bunch in a row, they suck, hard. But I kind of get used to them. I have no other choice but to learn to live with them. And though I love having a few weeks off from the big ones, I think it really makes the return of the big ones even harder. I no longer have the tolerance built up. I’m not longer prepared for them. I get caught off guard and almost even scared by them.
Such was the case today. I had a low level headache for most of the day. I had tried to ignore it, to caffeinate it, but to no avail. It was largely manageable, but as the day wore on and I was stuck in traffic for 2 hours, it grew. And I knew that the only thing that would really make it feel better was to lay down. But in the car, in traffic, that was not an option.
So I drove on. And the headache grew.
I finally got home and again, all I wanted to do was lay down. But the cats needed to be fed and dinner needed to be heated up and by the time I could finally sit down and recline the headache was big. Bigger than I am equipped to handle today.
It’s funny because many of you think that I am brave and all kinds of other things that are totally untrue. The truth is, sometimes I am just plain weak. Sometimes I cannot do anything but lay down and wallow in my own pain. And today is one of those days. I’m going to lay here on the couch, willing my headache to lighten up until it’s a reasonable time to go to bed. And then I’m going to hope and pray that tomorrow breaks the mini-cycle I’ve got going, because I could really use an easy Friday.
Or if not an easy Friday, than a return to the ability to cope with the headache so I can at least have a tolerable Friday. I’m not too demanding, frankly, I’ll take pretty much anything that is better than today.
I had an appointment for physical therapy yesterday and my PT asked me how I was, and to my dismay, the answer was better. I cannot tell you how many times I’ve come to see her in the past few months and the answer has been some derivation of “ugh” or “not great” and what I really mean is “freaking awful.”
She started poking around at my neck like usual, assessing how my muscles and joints were moving and she stopped with a gasp. For the first time in months, my neck is actually moving the way it’s supposed to be. Apparently having a few days off of really ugly headaches is a pretty great cure for chronic neck issues. Who knew? We always assumed the neck pain was tied to the headaches but it’s been so long since I’ve had more than a day without a really bad one that we’ve not had a chance to test the theory.
It was nice to see something improving for a change.
I started the Vitamin A last week, just around the same time my head finally settled down a little. I started at a low dose and have been slowly upping it every day. As the dosage has gone up and the headaches have gone down, I’ve been letting myself jump to conclusions about the headaches, about the Vitamin A. I know that this Vitamin A was a shot in the dark, but it seemed like it might actually be working.
Spoiler alert: it’s not.
Last night I upped the dosage again, and am now feeling the real wrath of the side effects of the vitamins. But even more fun, I have a substantial headache. I actually opted to drop the dosage a little tonight to give myself a break from some of the side effects, especially considering how much my head hurts today anyways. I’m a little bummed out, but I’m not really surprised.
I know it’s too early to draw conclusions, but given that I was on 5 times the normal daily dose of A and have been for several days and still got this headache, I think we can safely assume that the Vitamin A is not a miracle cure. Not that we ever expected it to be, but still. It would be nice to have a miracle cure.
Or even a miracle break. A few more precious days in a row, where life can be a little closer to normal would be more than enough. I’m not stopping the Vitamin A altogether, I said I would give it a fair shot and I intend to, but I’m done putting a lot of hope in it, because I know better.
I’m hopeful that the rest of my time in San Diego is more gentle and if it isn’t, then I hope my tolerance to the headache improves. I want to make the most of this experience and going to bed early and missing out on fun isn’t really part of my plan. All I can do now is hope that tomorrow is better.
A funny thing happened on Friday. Okay, it wasn’t funny, not even a little bit.
I went to a movie with my husband, a movie I thoroughly enjoyed. When the movie ended, I grabbed my phone to see who had called me in the middle of it and the screen just seemed painfully bright. And though I had had a headache all day, it suddenly became more apparent. More really seriously noticeably unpleasant.
Over the next 20 minutes the headache went from ho-hum to holy crap. And by holy crap, I mean literally, the worst headache of my life.
I tried laying flat, hoping that maybe this was a sign that I had an active CSF leak (yes, I realize how crazy that sounds, but laying flat relieves those and I really, really wanted relief). I tried migraine medication because I thought maybe it was a weird migraine. Neither of those did anything. No change, just horrendous pain.
The pain was where it usually is, it was just so much worse.
It was so much worse that I warned my husband that we might be spending the night in the ER because I was scared of what might be going on. I don’t do ERs for headaches, and I don’t take narcotics for them either because they don’t help, but at that point I’d have taken anything that was handed to me.
Thankfully, it didn’t come to that. Eventually I went to sleep and woke up in the morning feeling worlds better. I spent most of Saturday and Sunday laying low, I was scared it would come back. Like a mini-bout of PTSD. It was unpleasant, but compared to the pain on Friday, it was awesome.
I’m trying hard to focus on school, to make it through this week so that I can move on to vacation and relaxing. But these headaches are genuinely starting to worry me. Not because I think anything is horribly wrong, because I don’t. I don’t think that there’s a dark scary underlying cause. But I’m scared because, as my PT put it, this isn’t sustainable. If the headaches keep getting bigger and worse instead of better, I am not going to be able to do the things I need to do.
It’s starting to dramatically impact my quality of life.
I don’t know the next steps. I’m still waiting to get insurance approval for the scan that was ordered, I haven’t started the vitamin A because I want to be done with finals first. And many people have asked if I’ve called my neurologist, but for what? To say, hey, it hurts worse now! Though I’m sure she’d love to spend time chatting, I just don’t see how that would help anything. I just, I don’t know what to do. And I feel increasingly helpless.
I feel passive in my own life. And it sucks.
I know that in the grand scheme of life there are far worse things. But I feel like the grand scheme of my life is changing in a way I do not want it to, and that feels like a pretty bad thing.
Late Thursday night I sent an email to my former neurologist to see if he could help me get an appointment with the headache specialist he wanted me to see. He had given me his email for just this occasion, but I felt guilty using it anyway. To my surprise, he replied 4 minutes later and said he’d take care of it. I got an email the next morning, followed by a phone call and less than 12 hours after I had hit sent, I had an appointment with the new neurologist. For today, at noon.
Yea, I was surprised too.
So I met my new neurologist today, she’s just begun a fellowship in headaches in the same clinic as my old neurologist. It’s a pretty coveted fellowship, so clearly the girl is smart.
She had me take her through my whole history, starting when the headaches started in 2005. Going through the Chiari diagnosis, the watching and waiting, the progression of symptoms, the surgery. Then the CSF leak from the surgery, the period of no headaches, the return of the headaches, the lumbar punctures, the low pressure, the negative tests and on and on. We talked about all the medications I’ve tried for these headaches (there are a lot, none of which have helped) and the outcomes of all those medications.
Then she did a neuro exam, which was nearly perfectly normal. After the exam she just sat and talked with me. She said she’s confident that it’s not a number of things, most of which I already knew. It’s nice to be on the same page with a doctor. And even better, she believes she knows what the problem is.
Low pressure caused by a CSF leak.
Now, when I told my family this like 3 of them said (and I quote) “And?”
So yea, this is not a new diagnosis. The difference is that she finally made it make sense. My last neurologist ruled out a CSF leak and low pressure as the cause for a few reasons. First, my previous scans (cisternogram and myelogram) were negative for CSF leaks. That’s pretty strong evidence against a leak. Second, my headache was not positional. Typically with a CSF leak, when you are upright, it is severe, when you are laying flat, it’s better. And mine is not. And third, when I get leaks from lumbar punctures, the headaches are different.
But, it turns out most of that is not actually a persuasive argument agains a leak.
The new neurologist thinks I have a CSF leak around my brain, not my spine. And in those situations, the cisternogram and myelogram would not be sensitive tests to detect it. Especially if the leak is not constant and not huge, which is her belief. She thinks it’s a slow, relatively small leak that might not be open when I’m laying still in an MRI tube.
She also said that the reason the headache is not positional could be that the leak is not always open. She thinks the reason that my head sometimes hurts more when I’m laying down is because the leak itself is provoked in different positions. So it might be that I’m sleeping in a position that causes the hole to open. And the reason the headache isn’t as severe is because the leak is small, unlike the ones I’ve had after lumbar punctures.
The thing that sealed the deal was a review of my MRI from November.
My last neurologist had told me that the MRI showed that my cerebellum had herniated further, indicating a progression of my Chiari that might require further decompression surgery. It turns out, that wasn’t actually the case. The MRI showed “slumping” of my brainstem, which is a sign of significant low pressure. It’s also not a sign that we want to toy around with, the brainstem is pretty freaking important.
Her attending, who is a really well respected and very experienced headache specialist, agreed with her assessment. And he threw in an extra tid bit that has me reeling a little. He thinks that I may never have had a Chiari Malformation at all. At least not in the technical sense. I absolutely did have my cerebellum squish out into my spinal canal requiring brain and spinal surgery, but he thinks mine might not have been caused by having a small skull or a low lying cerebellum, but instead of from low pressure. He thinks my entire 7 year history of headaches might all come back to a CSF leak.
It’s like for 7 years everyone has been telling me that the sky is blue because it reflects the ocean. And then today they were like, actually, it’s turquoise. And now I’m all, holy shit. The sky just might be turquoise. THE SKY MIGHT BE TURQUOISE.
I’m hesitant to be too excited because if we find a leak (and this is a big IF since it has alluded several scans already) using a scan I’ll be having later this month, the only way to fix it is surgery. You may or may not know this, but I am keenly disinterested in more surgery. Especially since if we find it on this scan, it’ll be brain surgery, and that’s pretty much my least favorite kind of surgery. And more than that, I just can’t quite get my hopes up that we’ll find it at all because I’ve been down this path before and the results have not been great.
Thankfully the new neurologist is aware of that possibility, so she’s trying a two pronged attack. In addition to the scan, she’s putting me on a SUPER high dose of Vitamin A, which should increase my production of CSF, which should cause the headaches to decrease. It could further validate the hypothesis that low pressure is the cause of all of this and might even make it easier to see on the scan.
I’m teetering on the boundaries of excited and scared. It’s been a while since we thought we knew what the problem was, and instead we’ve spent a lot of time taking stabs in the dark. Today someone turned on a small light, and got us on a path. The end of the path is uncertain and scary, the odds that we’re still lost are fairly high. But we’re trying.
And for now, that’ll do.
This week is testing me.
This is the 5th day in a row with major headache pain. I have headaches everyday, so maybe 5 days in a row doesn’t seem so bad, but for my purposes, major headache pain means that if I had to put the headache on a pain scale it would be at least a 7 out of 10. Monday I gave it a 9 out of 10 and that was only that low because I literally drugged myself to sleep before it could get any worse. And the temptation to repeat Monday night’s sleep coma has been high, but I’ve tried to avoid it because I know it’s not really all that great for my body. Not that pain is really much better.
I just don’t even really know what to do. I feel like I’ve exhausted all my options.
I don’t have a doctor to go to. I don’t have a primary care physician, just a student health center. My neurologist finished his residency and is doing a fellowship that keeps him out of the clinic. I haven’t yet been able to get an appointment with a new neurologist. So basically there’s no one I can call, no one I can go see for help.
Someone recommended I go to the ER last night, but my husband was the on call neurologist and somehow I didn’t figure he’d be thrilled to have to do a full exam on me, write up everything and deal with my paperwork. Nevermind the fact that I’m pretty sure there is nothing he can do anyways.
Because there’s never anything that can be done. In the ER they’ll check my vitals and find my pulse to be a little high, it always is when I’m in a lot of pain. They’ll offer me narcotics and when I decline (because they don’t help and they make me sick) one of two things will happen. I’ll be immediately discharged home or I’ll be given a CT scan, which will show nothing (but will toss some more radiation onto my lifetime pile of it) and then I’ll be discharged home. If I go to the doctor they’ll offer me narcotics and consider a new MRI.
The result is always the same: nothing. No relief. No improvement.
I’m just so damn tired of this. I’m clinging to the very last fibers of a very short rope and hanging over a vast expanse of unknown territory. I don’t think I can handle much more.
I’m fresh out of hope that something will change. I feel like there’s no doubt that I’ll wake up tomorrow with the same pounding headache. I feel like there’s no question that meds will continue to be worthless, that life will continue to be exquisitely painful. I feel like the idea of expecting anything different is silly, like I’m setting myself up for more misery, though I’m entirely unsure that there’s such a thing.
I’m scared that this headache jag won’t end. I’m scared that if it does, it’ll start back up again. I’m scared at how much this hurts and the other weird symptoms that have joined in the mix. I’m scared that I won’t be able to work if this becomes the norm. I’m scared of what this kind of pain means for every single part of my life.
I’m scared. I’m hurting. And I just want some relief.
I get called a lot of things on the internet by a lot of people. By far, the one that stings the most is being called a whiner. And part of the reason why it stings is because it’s true. Unquestionably. I whine. Yesterday my twitter stream read like someone’s with no coping skills, and part of that was because I was FRESH OUT OF COPING SKILLS. Pain has that effect on me. Pain makes me totally lose sight of when I’ve crossed the line from sharing to whining.
And it’s kind of funny because in real life, I don’t complain much out loud about my pain. My physical therapist asked me how my head was yesterday and while the answer in my head was “fucking terrible” the words that tumbled out of my mouth were “not so great.” When I got home and put the headache on my calendar of headaches before drugging myself to sleep, I listed it as a 9 out of 10 pain. It was a tremendously big headache, one of the top 5 not caused by a lumbar puncture. I can tell you here that it was an incapacitating headache, but for some reason, when it comes to saying the words out loud, I cannot even describe them, let alone whine about them.
I think part of it is because I assume people won’t believe me. I mean, I was upright, walking around yesterday. I know that telling my PT that my headache was 9 out of 10 would’ve made her think I was nuts, even though it legitimately was that bad. And though I always want to qualify my statements by adding that I have a high threshold for pain, I also know that no one ever really believes that, no matter how compassionate. They smile and say I know honey, and then secretly think, yea, okay.
I think that in refusing to tell people, refusing to tell doctors and other health care professionals how bad the pain gets is maybe hampering my recovery. I tell them that it’s incapacitating. I tell them that there are days that I can’t get out of bed. I tell them those facts, but I don’t tell them that I sometimes wonder if it’s even worth being alive to have that much pain. I don’t tell them that sometimes I think of how much I’d have to hurt myself to make something else hurt worse than the headache, and consider if that would be a better thing to do than lay in bed wanting it to end. Because literally, that’s how severe it gets.
I’ve never articulated that to a doctor. I texted my husband yesterday that the pain was scaring me, but when it came to saying it out loud, I just told him it was bad. For some reason, I cannot let the words pass my lips. It’s as if when I say it out loud, it becomes really serious instead of just serious. Like it’s impossible to ignore it once I tell even my husband that I’m scared of how badly my head hurts.
And so yes, I am a whiner here, I admit it. I’m a whiner on twitter, and on facebook sometimes too. I whine there because I don’t know how to speak the words out loud. I whine to people I don’t know because I cannot tell the people around me the truth. I whine through my computer because I haven’t found my voice in real life, because I’m afraid that if I tell someone how bad it is that they won’t believe me. That they will brush me off, or label me as crazy. And yes, the internet labels me as crazy all the time, but I don’t have to see it in their faces.
I whine because it’s the only way I know to end the self-imposed alienation from this pain. It’s the only way I know to say what needs to be said, to share what I cannot bare alone.